First EB Clinic Of The Year
Wow, what a day. I’m tired!
You know that exhausted, fragile, feeling sorry for yourself feeling you get after you’ve had some procedure like a blood test or stitches out etc?
Yeah that….
Now add on to that getting up at 5.30am to be at the hospital at 7.30am, to have all my dressings removed by 8am for the Doctors to look at me naked and take photos checking for SCC’S (cancers) or if I need any biopsies, having a cannula put in when you have microscopic nano veins so they can take some more blood and then start a zinc infusion, then having an echocardiogram because my cough has come back and we were worried it was cardiomyopathy again (turns out its not YAY! But what is it?), then trying not to gag whilst taking out my old Ng Tube and having a new one inserted (Thankyou Lesley!), and finally seeing the Renal Dr and trying to work out a strategy/regime for all the drugs/dialysis fluids etc etc.
Got that? Yeah I’m tired….
Goodnight
sweetheart, i’m a 30 year old woman who read about you and
your blog via the SMH article today. upon reading a few posts, i
just wanted to say that I think you are absolutely amazing. i have
two young daughters and I really hope they grow up with all the
wisdom, interest in the world and great sense of humour that you
display. if there’s ever anything I could ever do to help you then
please let me know. my favourite perfume is Chance by Chanel
xxx
Hi Nikki, I read about you on the Sydney morning herald. I
also read your blog. Your positive energy is fabulous. I can feel
your Positive and happy attitude from your blog. Thanks for sharing
so much of yourself, you are amazing. Btw: I just bought Versace
bright crystals and it’s a nice perfume. My other favorite is blue
illusion by Estée Lauder. Take care and I’ll keep following your
blog. Gabriela
You are so inspiring and amazing. You are so strong and so
Best of luck for the
beautiful. It sounds like a busy schedule, but I hope all the best.
I hope everything goes without a problem <3 You are
beautiful and do not deserve any of this.
future, Sarah H.
Sounds busy! And uncomfortable. Would love it if you could
do a post explaining the medical jargon